12.31.2009

Leo might not be the most assertive member of our ensemble, but he's the one improvising and leading the spontaneous family singalong:

Seymour and I spent New Year's Eve 1999 with his parents, his brother James and our very pregnant SIL Bree at Emeril's Las Vegas, where we dined for three plus hours while everyone cooed about our perfectly gorgeous and angelic baby girl. We then pulled a Moses/Red Sea maneuver, screaming at the New Year's Eve revelers on the bridge between the MGM Grand and New York New York to part ways so baby Iz and Bree's baby belly could make their way to the other shore without being crushed.

Tonight, there'll be a bit less excitement, but we'll be a family of five -- five! -- hunkering down and watching silly movies and enjoying our own version of togetherness. I'd rather be in 2009 than 1999, honestly. 2009 was a good year for our family.

Here's cautiously hoping for more happiness for our family in 2009, and openly wishing extreme happiness upon the rest of you.

12.23.2009

Don't let the swimming kids fool you, folks -- it was 51°F outside. But the pool and hot tub are heated and hey, it's Vegas (proof in the skyline behind that happy happy otter/dolphin boy). People do unexpected things.

Leo is having a good day today, still. The visual schedule, which Seymour had to remind me to bring (frazzled travel prep brain) has made it much easier for him to adapt to a new environment, and moderate any displacement anxiety. He is soothed by his favorite dinosaur puzzle from our friend Charlie, and a couple of new sensory toys. We have swimming and hiking out the back door, so all that energy has a place to go. We are still very much in a 1:1 me-or-Seymour scenario, but his outbursts have been few, entirely understandable, and easily defused.

Seymour and I are tired but pleased, and so grateful to get spend time with his parents. Fingers crossed, so tightly. If this trip succeeds, what could Leo succeed at next? We're trying dinner out with the grandparents tonight. They have no problem with Leo needing to leave early, but definitely want to make the attempt.

I am nervous. I am cautiously optimistic. I have packed the full arsenal of Leo-happiness triggers. I am open to suggestions from anyone who knows about good activities for kids on the spectrum in beautiful Las Vegas.

Nervousness: Leo's been doing less well than his almost beatific well of 2009's January through November. He was still doing reasonably well when December started, so we decided to take a chance on a full-family trip (the kind where Mali doesn't have to ask, "Is Mommy coming too?").

It seemed like Leo's behaviors spiraled downward the day after we booked and paid for our flight. He started being fidgety, loud, and doing a lot of rapid-fire and ceaseless raspberries whenever he's seated. I didn't really notice this until Rook and I took our four kids to see Fantastic Mr. Fox, and Leo's noises and behaviors drew looks from other members of the audience.

He's also started to bust out with occasional hopping flailing octopus episodes where he decides that the best way to inform me that he dislikes an activity or wants to get my attention is to thwack me as fast and as many times as he can. At home I back away and tell him NO very loudly and firmly; in public places like post offices I have to keep ahold of him lest he bolts, and get pummeled.

I really, really hope his spitting and pummeling don't happen on the airplane or in the airport. But just in case, I am carrying a copy of the U.S. Department of Transportation's Nondiscrimination on the Basis of Disability in Air Travel (note: PDF) and will wave the following excerpt under the nose of anyone who complains about Leo's behaviors:

§ 382.31 Refusal of transportation.
(a) Unless specifically permitted by a provision of this part, a carrier shall not refuse to provide transportation to a qualified individual with a disability on the basis of his or her disability.
(b) A carrier shall not refuse to provide transportation to a qualified individual with a disability solely because the person’s disability results in appearance or involuntary behavior that may offend, annoy, or inconvenience crewmembers or other passengers.

This is not a preemptive #suckit for the other passengers; it's a way of guarding Leo's rights. Air travel means playing a lottery in reverse: usually you'll win, but sometimes you lose and get stuck near a crying baby or a kid like my son, neither of whom are responsible for their behavior, both of whom are likely in great distress, each of whom have as much right to be on the plane as you do -- and who are accompanied by freaked-out adults doing their best to calm the kids down, because we so do not want to piss off an entire planeful of people.

** Deep breaths. Not hyperventilating.**

On the cautiously optimistic side, he's using a lot of great language. Some of it makes us really sad; he enjoys thinking and processing and reciting items in pairs, and has a hard time mentally adjusting when we tell him that some of his favorite pairs of people are no more, like Jo Spanglemonkey and Manny, or my mom and dearly missed dad. He then goes over the pairs again, looking at us quizzically, as we remind him yet again that Pepere isn't here anymore.

He's also starting to verbalize whether people are present or not. The same sadness applies when he keeps insisting, "Grandma is at home. Pepere is AT HOME," and I have to tell him, again, that Pepere isn't here anymore (I don't know that "dead" makes any sense for him). Although I do appreciate his growing ability to recognize when house guests are no longer staying with us, e.g., "Badger is at home! Moomin is at home!" Those wheels are turning.

I hope his continuously expanding language skills and love for his grandparents (and their love for him) factor into a good, or at least a manageable, visit. We used to be quite the traveling family, and Leo used to be quite the traveling boy. Every single one of those trips was to visit or travel with family and friends. Leo usually loves being in airports and flying on planes. I'd like to see us inch back towards the traveling lifestyle that our sweet, social boy deserves -- but only if he can tolerate it, only if he wants to. This trip will be telling.

Of course I stalk my birth son on Facebook. How could I not? His barely-open adoption slammed shut fifteen years ago after his mother suddenly took ill and died, and the gods of irony handed his father the closed adoption he'd always wanted. I spent years hoping for information but listening to cricket chirps -- until two years ago, when a cynical Facebook search turned fruitful: he had a limited public profile! I've been checking in on him weekly ever since.

I finally wrote it out after Facebook exploded everyone's privacy settings, and I gained access to his Wall. It was too much OMG to keep to myself! Also, acquaintances who knew about my birth son kept asking if I wanted to see the new birth parents/children reunion reality show, Find My Family. (My answer: hell NO. He doesn't know he's adopted, there will be no reunion, stop sticking bamboo slivers under my fingernails please.)

But the BlogHer post wasn't the first time I'd written about my birth son -- I blogged about him in 2005, when Facebook didn't exist and he was still lost to me:

When he was still very small, his mother died. I found this out while my husband and I were trying without success to have children of our own. In my anger, I cursed the universe that allowed my birth son to be a motherless child, while I remained a childless mother. I simmered down after the joy of our first child's birth, but still wonder how that boy will feel if he ever finds out that he could have had contact with another mother during all those lonely years.

(Note that I was still in thrall to DAN!/curbie/autism stigmatization at the time, and also complained about giving up an NT son and then having one with autism. We all learn and grow, right?)

The sudden opening of Facebook pages scared plenty of people into purging their pages of their drunken idiocy, but for one mother who gave up her son to adoption, it was a gift.

While you were trying to figure out if Mark Zuckerberg was indeed drunk or stoned, Shannon Des Roches Rosa was lovingly taking in every last detail of her biological son’s life, piece by amazing piece.

At age 6, when I first learned I was adopted, I cried and cried, not because I wanted to know who my birth parents were, or because I felt lost or empty, but because I wanted to have been born to my parents. I loved them so completely that I didn't want any mysterious thing out in the world to mean that I was less a part of them.

I also think that, were such a reunion to happen, I would like it to happen more gracefully and with more professional courtesy than those on Find My Family. So would SocialWrkr24/7:

Also, this episode was the beginning of my issue with the hosts because I thought it was pretty obvious that the adopted daughter had NOT been looking for her birth parents. She said she thought about it and that her adoptive father had encouraged it - but she hadn't done so yet. Obviously she had her reasons - but all of a sudden there was Tim Green at her door with the "exciting" news that her "mom and dad" had been looking for her! I felt like the poor girl looked shell shocked through most of the reunion process. This is one of the many reasons that I feel like some kind of "professional" would be better suited as the host. Reunions are wonderful on TV, but in reality that can bring up all kinds of complicated mixed feelings.

Me, I'm just glad the story's out there. Who knows, maybe he will come across the BlogHer post one day and recognize himself despite the scrubbed and altered details, and pursue contact. I certainly wouldn't mind. He seems like a very cool young man.

12.15.2009

If I had my own reality show, I'd do a Mythbusters spin-off called Exploding Stereotypes, in which my team and I would travel the world, methodically exploring stereotype histories and flaws. I'd want to start with autism, of course. Should I begin with the "special gifts" savant stereotype, or with the "no empathy" stereotype? How about the latter?

Because people with autism or Asperger's can have difficulty interpreting body language cues, they are stereotyped as unable to feel empathy. So untrue! My son is not much for conversation, but he can be highly sensitive to my body language, snuggling with me when I'm physically slumped and low, dancing with me when I'm happy. Ours is a genuine emotional connection.

12.14.2009

So this is what having a slightly-more-than-part-time job means to me: I have finally reached my personal busyness limits. There is no space for cramming, no staying up late to finish what needs to be done because I already am staying up late, sometimes until 2:30, and still running into a daily wall of personal fail. "Taking a break" now means watching an episode of Glee while doing laundry. "Taking it easy" means going to bed before midnight. It's fascinating, invigorating, and soul-deadening all at the same time.

But, being busy gives me a good reason to say No, though I am still struggling with actually saying the word. Being busy also makes prioritizing a hell of a lot easier. Two weeks ago, while I was on deadline, my mom called. She was staying with us for Thanksgiving and was out running errands in my car, so I figured she was calling to check in. Except she was calling to tell me that she'd been the victim of a hit-and-run accident.

Former me might have freaked out. Busy me blinked, then asked if she was okay. She was (whew). I asked if the car was drivable. It was. I asked if everything was under control, or if she needed my help. It was, the police were on site, and she didn't. I thanked her, the stars in the heavens, and went back to work. Everything turned out fine, she was unshaken, they caught the other driver, and I'm tooling around town in a snow-white minivan courtesy of the perpetrator's insurance while my own car gets fixed. All of which would also have happened, had I gotten agitated. But I no longer have time to get riled about that which is under control. Thank you, busyness.

Busy me is both more and less in touch with my body. Three weeks ago, I sprained my ankle by walking down the street while on a work conference call -- but no one on the other line ever heard a peep (though Jennyalice, who was a few paces away, wondered why I started hopping up and down on one leg since we were discussing matters more administrative than incendiary). I was in control! That same afternoon, while attempting to demonstrate that the pain did not get to me and yes of course I could entertain my friend and all of our children while both chatting and serving up group snacks, I misjudged a pupusa location and flash-seared my fingertips on our cast-iron skillet. Clearly, the distraction of being busy doesn't always agree with my body.

Since my laptop lets me work anywhere, I have to be careful about reining in Busy Me. Otherwise, I'll try to fit in a bit of work while making dinner. While watching Ugly Betty with Iz or Totoro with Leo or Dinosaur Train with Mali. While doing laundry. While supervising homework. While helping Leo do puzzles. While decorating the Christmas tree. I thought I was being an able juggler, but this past weekend Iz complained that I work too much, that I'm always working, and she hates it. So I'm thinking about shelving the laptop between school pickups and bedtime. And slightly panicking about losing those valuable interstitial work minutes.

The biggest struggle so far, though, is self-judgment. I'm far from the most busy person in my circle. Yet everyone else I know seems to be juggling more, and hitting all their deadlines. Perhaps I know too many superhumans? I'm not sure. I do know this will only get more interesting. Seymour is going to start traveling a lot for work (everything he's doing is damn cool; I entirely support his going). Leo is only going to get bigger. Iz is coming up on teenhood (please God no). Mali is experimenting with unrepentant defiance (not just towards me but towards her teacher). What are we going to do?

But despite my time challenges, our family situation remains an awesome one. Our kids are sweet and funny, and genuinely caring beings. We have good friends. We carve out time for the events that truly matter. We laugh a lot, we eat well, we are warm at night. I'll give this busyness another couple of months. I'll put away the laptop in the afternoons. And then I'll re-evaluate, because I don't want to be too busy to enjoy the wonderfulness that weaves in and out of my life, every day.

12.11.2009

The busyness of the past two weeks has been a big wow. Lots of work hiccups keeping me & the rest of the team on our toes, a cool business trip for Seymour, a birthday party for Mali, lots of visits from relatives and friends, BlogHer parties, soccer tournaments for Iz, excellent behavior & new developments from Leo, and very little sleep for me. The result: I declared this past Sunday's tired "unprecedented." I didn't win anything, though, except the satisfaction of getting some decent writing out on other internet spaces besides this one:

I hope our book helps its readers to stretch their definitions of inclusion and helps complicate mainstream ideas around individualism that silence or obscure the ways children are connected to their families and societies. Inclusion is a process and the work is never ending.

I do my best to teach my two daughters to celebrate their beautiful and very different bodies just as they are. I talk about any problems of my own in terms of health, not moral failure. I do not hide my body, nor make excuses for it. And I stock my girls’ everyday lives with strong, confident women who talk about their bodies with practicality and humor, because I believe a positive body image is learned, like table manners or martial arts.

My kids call this scrumptious all-in-one meal "Vietnamese pork bowl." It's a crowd pleaser: gluten and dairy free, vegetable gateway for picky eaters, straightforward preparation, and its three-hour process is done in spurts with lots of interstitial free time to pull apart brawling children—and oh my goodness is it delicious. Even my picky son with autism can be coaxed into nibbling on one of the carrot sticks.

And on Can I Sit With You?, I got to enjoy the fruits of a solid month of badgering Michael Procopio for another story, as he sent us The Horror of Chitty Chitty Bang Bang (So I didn't write this one. But I did solicit, copyedit, and post it!)

As the two cute-as-can-be children of Dick Van Dyke’s character, Caractacus Potts, Jeremy and Jemima were the manifestation of my two greatest childhood fears — abandonment and replacement. Where did these children come from? I squirmed in discomfort every time they screeched, “Daddy! Daddy!” I simply could not accept that these were Mr. Van Dyke’s children, because as far as I was concerned, Dick Van Dyke was named Bert [from Mary Poppins] and already had two children.

Time for some sleep, though I once again failed to get to bed before midnight. I'll try to get up some details from the past two weeks, perhaps tomorrow.

12.07.2009

Mali's fifth birthday party was nine days ago. Half of the wrapped presents our lucky girl was given are still in the back of the car, a third of them are on the dining room table, and Mali opened up two -- one a cherished package of all possible sparkly accessories, from Jenijen & Willow.

This is how things have been lately. An avalanche of goodness that we're too overwhelmed to process.

I have to laugh, remembering Iz's 5th birthday party. She created her own superhero, Super Jill, who was superstrong and had a cape with magic gold dust pockets and could levitate objects, specifically evildoing egrets. Her party invitations were mix CDs fronted by an original Super Jill cartoon. Her favors were custom Super Jill comics/coloring books, with story by Iz and illustrations by me. My mom and I made her an actual Super Jill costume. There was a pinata, a bouncy house, 80 or so guests, and Chris Molla was the entertainment:

By contrast, Mali's 5th birthday party took place at a local bouncy house establishment. We booked it, 20 of her friends and their families showed up, we brought in cake and cupcakes, and everyone was in and out in two hours. Everyone also had a fantastic time. I suspect the only real difference between Iz's and Mali's parties was the level of adult involvement, not kid enjoyment. Lesson learned!

The kids all jumped themselves semi-senseless, and then were revived by cake. Mali got to be the girl in the giant birthday chair to whom everyone sang Happy Birthday (and then shared her chair with Jennyalice's Lucy).

A much easier and still very joyous birthday party! I just need to figure out when we're going to open those gifts...